Thursday, November 7, 2013

Running to stand still

I am on the treadmill of life, running to stand still . . . and I’m not really even
managing to do that. Every time I find my footing and start to gain ground, the
speed picks up, and I am flailing.

It started with the busing.

(The treadmill starts, a brisk walking speed.)

At the start of the school year, we had no usable busing. We
were commuting for 4 hours a day (which includes diaper change time, parking
time, traffic allowance time, and talk-to-the-teachers time). It felt
unsustainable . . . Will would cry in the car, I slipped into driving with the
assertiveness of an NYC taxi driver, and I thought about all of the work I
could be doing instead of driving. (I
haven’t managed to bill a single hour since August, by the way.) I studied for
exams by flipping through flashcards while I waited at stoplights. We play a
lot of I Spy. My car became a great site for an archeological dig, with layers
of toys (thrown over my shoulder at Will), snacks (thrown at everyone), and
other random detritus (Maya’s a big fan of picking of leaves and then shredding
them, so that’s fun).

Two months later, we still have no busing, through a
combination of DOE ineptitude (one (temperamental) person is in charge of all
of this? And she doesn’t know what to do? And she doesn’t return phone calls or
answer her phone? Really?) and the fact that a few weeks ago I stopped calling
to follow up. Kindly save your “call a lawyer!”s or “I would just go to the
office and sit there until they fixed it!”s . . . because I have and I did, and
it hasn’t worked. I understand and appreciate your sentiments, and I would
likely be very “Well-I-just-wouldn’t-stand-for-that-if-I-were-in-your-shoes”
too, if I wasn’t all too familiar with the belly of the beast. Huffing and
puffing and lawyers and noise sometimes works, and it sometimes doesn’t,
and . . . well, and then everything else
happened. And suddenly the fact that I’m
in the car for a few hours a day was at the bottom of my problem list.

Maya’s transition to a new school has been rough. (Kick that
treadmill speed up a few notches)

She is funny and silly and social. And defiant and
strong-willed and anxious. She is a lot of work. While many parents have kids
who are well behaved at school and then raise hell at home, we have (mostly)
the opposite. (Don’t get me wrong, she can be a handful at home as well, but
she works with me much better than anyone else.) This has resulted in a large amount of
communication with the school---chats at drop-off and pick-up, notes in the
communication notebook, troubleshooting emails with teachers and therapists and
the school director and the behaviorist, meetings (spontaneous and planned),
and observations (her classroom has an observation booth—cool, right? I have
spent a lot of time in that booth.).

This is stressful, obviously. I worry about her lasting at
this (very good) school. I worry about where she would end up if she wasn’t
there. I worry about her long term education plan, as I would like to see her
in a larger, inclusive classroom in the future, and her choices right now make
it difficult for me to envision that happening. I worry that her staff won’t
like her (not that they would treat her poorly, but that she would be that kid---you know, like if she’s absent
the teachers would be like “Yes! A day off!”). I want them to see what I
see---so much cleverness and silliness and possibility locked in a body that
doesn’t work quite right and anxiety that makes her freeze up. I need them to believe
in her, to enjoy her, to push her. I worry.

And she won’t use her talker. (Go ahead and increase the
speed again.)

This isn’t a big surprise, but it’s frustrating nonetheless.
As she speaks more and more, she pulls away from the talker. Whenever she is in
a group setting (school, relative’s house, etc) she pulls away from the talker.
She’s a sponge, a watcher . . you can see her wheels turning, but she doesn’t
jump in easily. (That’s the way that I’ve always been, too---so I get it.) Couple that with the fact that if someone new
prompts her to use the talker, she may very well refuse on principle, or
because she’s anxious (see above) and now it becomes a potential power
struggle.

And then the medical stuff started. (The speed increases. I’m
barely hanging on.)

The medical issues were all new (or new-ish, existing in
lesser forms in the past but now coming to a head). We added two new doctors to
our list last week (a GI and an endocrinologist) and tomorrow will gain a third
(urologist). Every issue falls into the grey zone of
could-be-no-big-deal-but-in-rare-cases-could-mean . . . and that means a lot of tests and
following things closely, because Maya likes to be a rare case. She missed a few days of school while we
dealt with one issue, missed another few days for appointments and illness, and
I feel like we can’t catch a break.

I forgot about the panicked fear that accompanies new
medical concerns. We’ve been at a medical cruising altitude for a while, autopilot
on, just cruising along. I forgot about the way that a new medical situation
shakes your whole world. I forgot about the exhaustion of introducing Maya to
new doctors, the mind boggle that happens when they say “So, tell me about Maya”
and I freeze, because where do I start? And what do I tell them? I can’t spend
2 hours listing every little thing---what if I forget to include some weird
detail that turns out to be critically important? I forgot about the google
dance---the way that I refuse to google symptoms and syndromes, because I don’t
want to worry and I want to let the doctor handle it . . . but then the way
that I feel a responsibility to google and research because I know Maya’s
laundry list of signs and symptoms in a way that no doctor will be able to
figure out during a consultation.

I forgot about the anxiety that slowly builds as an
appointment gets closer, the adrenaline rush of appointment day, and the
no-amount-of-coffee-will-possibly-help crash that happens after you leave the
appointment, regardless of whether the results were good or bad (or, most
likely, ambiguous, with a follow-up to be scheduled in a few weeks).

Last week, we met with the new GI. Good appointment,
thorough, and at the end we had created an action plan for moving forward. As
the doctor and I pulled our chairs together to review the papers, Maya tensed
up next to me and started to lower to the ground. I thought that she had
started to lose her balance and decided to sit on the floor, but I looked at
the way she was moving and something didn’t seem right.

And then I realized that she was having a seizure.

(And the speed hits the max, and I fly off the back, and I fall
to my knees, and I am done. Done.)

Maya is not a seizure kid. Prior to last week (a week ago
today, actually) she had never had a seizure.
This was not on my radar.

In a former life, I was an EMT. I have emergency training,
and (academically) I know seizures. I know to clear the space, not to put
anything in the patient’s mouth, to let them lie in a safe position until it is
done.

I was down on the
floor in an instant and pulled her onto my lap. I spoke to her quietly but with
an edge of panic in my voice.

I know that the vast majority of seizures are self-limiting,
they end on their own. I have heard that the seconds feel long.

So, so long.

It was done quickly, but I can still see her curled, propped
in the space between my chair and the examining table in the room, her hand
shaking, her eyes staring ahead. And when it ended (quickly, maybe 10 seconds)
she was disoriented, she didn’t turn to look at me, she was sweating and pale
and nervous. She started to cry, and the doctor and I looked at each other in
disbelief, neither fully sure what had just happened, both in slight shock.
That minute of initial panic gave way to forty minutes or so of recovery, then
hours of phone calls to the pediatrician (multiple times), the neurologist,
Maya’s school, family (it was really fun to call Dave at work and break the
news).

The seizure was the thing that stopped the treadmill. The
straw that broke the camel’s back. The thing that brought me to my knees.

I surrender. I have been beaten.

But there’s an odd relief to surrender.

With every issue, the one that preceded it seemed smaller.
Driving to and from school seems like a silly problem when your child starts
behaving in ways that exhaust everyone, to the point that you worry whether she
will alienate the people that (desperately) need to be in her corner. Bad
school behavior seems small when you have concerns about your child’s health,
are starting supplements, running tests, and googling potential new issues. And the stress of running tests and meeting
new doctors for potential health problems that will be manageable with
supplements or medicines or surgery or whatever suddenly seems very small when
your little, ponytailed five year old has sunken to the floor and is seizing in
front of you.

Very small. So very small.

The problems are still there (and more, bonus run-of-the-mill
problems: piles of laundry, an apartment that devolves around me much faster
than I can attempt to clean it up, bills that aren’t paid on time, etc), but
they seem so much less important. (And I also know that the past year or two of
medical cruise control were a luxury that some families don’t get.) Now I have the biggest problem, the fear of
medical unknown. I haven’t been nervous about Maya, medically, in years----but
this is the reality of an unknown genetic syndrome. It’s the gift that keeps
giving. Will she have more seizures? I don’t know. Are seizures typical of her
genetic syndrome? I don’t know. Could they increase in number? In severity? I
don’t know.

I know that tomorrow we will meet a new doctor and possible
run some tests, and that at the end of the month we will see the neurologist
and possibly run some tests. More importantly, I know that tonight, we are all
home and safe. I know that Maya had a good-ish day at school, and that Will
didn’t cry at all during our commuting time.
Maya was silly after school and
Will is toddling everywhere with his little Frankenstein-ish waddle. The kids
are tucked in and dinner is done and right now, things are quiet. Tomorrow life will go on, and I’ll jog to
stand still, but I’ll probably fall a little further behind and that doesn’t
seem like a big deal anymore. I remember now that I can’t take anything for
granted, even the crappy-too-fast-treadmill-times, and I’ll will my feet to
keep moving and hum a little tune to myself and remember that nothing is
forever, in more ways than one.

17 comments:

I know so much what you mean. Sophie also has a rare genetic syndrome, not yet specified (although we might be close). She is also rare. School and bus are good so far but I understand the fear of her being where she is liked and supported. I too have a little boy who gets dragged along everywhere (and two older kids but that's another story). And I live in fear of seizures my heart literally just stopped reading that maya had one. Sophie's genetic condition, brain malformation AND autism all put her at high risk of seizures. Miraculously she doesn't have them-yet. Hugs for you, I understand the treadmill you are on, I'm right there behind you.

I totally know how you feel, we have had a year or so of not playing the guinea pig diagnosis game. And then a few months ago, my (now 4 year old--today actually) started having leg pains (okay not a huge red flag, we have spinal cord issues) then her feet were "asleep" then it was to the point where she refused to walk some days. So now we have new doctors too. A new neuro for a 2nd opinion, neuromuscular clinic, EMG testing, rhematology, on top of the like other 17 doctors we've seen!!I hope you find some answers, both of our girls have had a few seizures but their is no rhyme or reason to them and they have normal EEG. They suck, and they are scary but not the biggest thing we've ever faced. Urology wise, we are practically urology experts (reflux, smaller than normal kidneys, neurogenic bladder, we had to cath for a while, and multiple other dx including bladder surgeries, etc) so if I can help at all with that, shoot me an email!

Although I don't know you, I have followed your blog for over a year... my heart is aching for you and your sweet family. I won't even say, "hang in there...", because you know you will do just that. Mama's and Daddy's of kids who defy explanation are forever "hanging in there", and are usually doing that by just a thread. I pray that the thread you are hanging onto remains as strong as you are... Blessings.

I am so sorry you are feeling so overwhelmed. This too shall pass, but along with the passing will come another stresser. Oh the joys of motherhood, especially when special needs are thrown in. And like you said, when faced with bigger issues, issues we thought were big suddenly become smaller! I hope for no more bigger issues for you. I will be thinking of you guys and praying for answers for sweet little Maya. Hang in there, Mom. You are doing great!

My dear, wonderful, inspiring Dana. Seeing the child you love with all your heart and soul seize in front of you is, to me, one of those "stop the world because I want to get off" moments. Sending you buckets of love and mental, physical, and emotional strength. Love, M-L

I don't know you. I've read your blog since we started our own SN journey nearly 2 years ago. I've become ardently convinced that SFY is the best talker app out there, though I'll likely never have a need for one. :-) And, though you are a stranger to me and I to you, I'm crying as I read your post. I've sooo been there. (Not after any period of time of medical cruising, but even so... with the overwhelmingness of a new and unexpected medical challenge with a kid who doesn't like to be typical.) Hang in there. Keep jogging. I'll add you to my prayers.

The whole treadmill cycle is so hard. For us it seems all is well, and then it builds up to being too much. We are there with a 2 night in hospital video EEG for my oldest, me getting my tonsils out, Thanksgiving and the wee one's birthday all in the span of 3 weeks. WAY too much - which totally makes all the ball juggling we do on a daily just too much. But this will pass and we'll get back to a new normal. But seizures alone are such a tricky thing to diagnose and treat - and is such a pain when you're already dealing with other a plethora of things that are tricky. Praying you get back to a more even keel soon!